| Sun, 29 Dec 2002 19:43:49 -0000 Kaye, Your are very welcome for the journal, I do hope it inspires and gives you hope for the near future. Do you lip read at all ? This I think is important to try hard and do. Whatever speech sounds you hear and associate with lip movement will help and should you suddenly loose your hearing completely, you will not find yourself so isolated. I did not have the chance to practice as my hearing fell apart so quickly and I was so unwell from the mass of drugs and fear of the unknown, I did not really thing about this form of communication. I learnt finger spelling, it only took the family and I an evening, and if you get stuck on a word, you husband and daughter can use this. If this is of interest look at rnid.org , I think it is under the heading of Fact sheets it is a charity in England, but I am sure it is fairly universal for English speaking people, not that it really matters but it may help you and your family to communicate better and give you a little more peace with yourself. No, I am not a very important person !, just a dumb old country builder boy ! In my experience my building work was such that I often worked for well known people, most of who were pretty obnoxious, I think it goes to their head, some were normal and kind and considerate. I made a fair amount of money in my thirties and bought a 15 century house well away from the crowds. This in Southern England is considered very fortunate and fortunate people tend to do the same. Does nothing for me I am a very private person, but Julie and her husband moved into our track some years ago, he farms organically and she now only does a bit of work here and there. Their daughter now 13 had leukaemia 10 years ago, whilst she was doing Hollywood stuff and she decided that her daughter was much more important than the Hollywood scene. She is normal and when I was abroad and Myfanwy had injured her leg and the kids were small, she came and cooked and cleaned the house, very special people. My luck came to an end in the early nineties, the recession was putting thousands and thousands into bankruptcy. I was very lucky in that I had masses of work, but the continual bad debts to me meant I had to shut my company and continue to trade as self employed. As soon as I did that the bank wanted their money back and to cut a long story short we had to sell the house at some loss. We retained a few acres of land and the farm buildings and started to convert and move into one of the barns. This then I think started the health problems I now have. I was working from 5am to 10pm in London which is a 100 mile round journey and is so busy at best would take 3 hours and often 5 hours travelling 6 days a week. All the money went to the bank and renovating the barn, no money left over for years, no treats, no holidays nothing. The council found out about us and set about trying to evict us. This went on for 2 years, with lots of other personal and financial problems paying people to handle the council planning department. In the end we won, almost unheard of and the first time the professional people had won such a case. I was feeling more and more tired and getting thinner and thinner, but was so busy working and fighting, I just put it down to stress. I was then diagnosed with hyperthyroidism at a level the doctors had not seen before, and were rather suprised I was still functioning, so I was laid up for 6 months a physical wreck. I then fought hard and got plenty of local work, we had to sell the vans to pay for our fight with they council so we only had one beaten up old car that would not make it to London. Then the hearing and balance problems started. What this all means to me is that if you try hard enough, out of disaster comes good. We have no money to speak of, but we have a house that is paid for and should anything happen to me the family have a roof over their heads. We have become much closer as a family as well. I am more tolerant and thoughtful of others, except for people who will not get of their butts and try and make things work, Myfanwy’s brother springs to mind, but that’s another story ! Are you asleep yet ! I am so sorry about your daughter, it is so cruel to have to start fighting a problem at such a young age, do give her a hug and I hope the specialists can pull their finger out and get on. Thank heavens the insurance has come through, In my ignorance I would have thought that a medical insurance would cover everything, but I guess like all insurance there are get out clauses, I do not find that right when dealing with your health. What happens if you need treatment and you have no insurance ? is there any sort of health service in America ?. Over here you can buy optional health cover and it does get you to consultants, care and surgery quicker, but a least if there is something serious or life threading our National health service will pull out all the stops. It is easy to see it as a free service, but they do deduct a fair portion of your wage specifically for health care. woops I am rambling on. Thank you for your experience of AIED, Prednisone is a powerful drug and I was only to keen to get of it, I knew when the 2nd ear was going, that I would loose my hearing no matter what, in fact I through all my pills away and concentrated my mind on the task ahead, the vestibular suppressant particularly were a great hindrance in rehabilitation. I agree I do think there are any specific tests for AIED, just a diagnosis of what is going on and what you body has and is experiencing health wise. Fallen asleep yet ! The batteries for the C11 are rechargeable and slide on and off the processor easily. this is possibly a down side to this implant, however I thought that the implant was possibly able to handle a greater amount of information than the others. Who knows ? they are all wonderful pieces of kit. There is a new processor and rechargeable battery coming out soon for the C11 and it will also have provision for a AA battery pack than can be clipped on to a shirt or whatever, so if you do not have access to a power point, say gone camping or whatever you can at least still hear. You get 4 rechargeable batteries with this implant and I think you will find American insurance will cover replacements when they are knackered. I think the 2 other companies use two, three or four hearing aid type batteries. Please do not apologise about getting back to my e-mails, you have many things going on and give yourself some quality time. My warmest regards to you all, and a happy New Year. Rob |
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